Idelalisib & 17p deletion
Is anybody else on my "whacky" journey with this most difficult prognosis.. It'd be good to share experiences and thoughts... Positivity all the way!
My husband is 17p and 11q deleted. Neck nodes enlarging recently. Still not commenced treatment.
17p and 11q deleted. Those are tough odds. Best of luck on his journey.
do you know what treatment is being lined up for him?
Do you know what treatment your consultant has in line for him?
I am 53 and have 17P Del and Trisomy 12. I have been on Watch and wait for almost a year but Lymp nodes are getting bigger. Taking high does of green tea supplments. There will be a Imbruvica + Venoclax Clinical trail starting in Late Dec that I might do. It will be at 20 cites. I will probably do this. It should be a great Combo Therapy!
Like you I am 17 p but am on Ibrutinib .
I have been on Ibrutinib since May of last year .
My consultant is happy with how things are going .I will see him again inOctober
How do you find Idelalisib ?
The Ibrutinib is working well for me .
Can't say I never get any side effects because that wouldn't be true .I seem to lose one side effect and then go on to another for a few days .
Some days though a feel really good and think that they must have been mistaken and I don't have Cll at all .
Idelalisib is working well.. my blood counts are near normal with no side effects at all.. My consultant has raised the idea of a mini stem cell transplant which I'm considering now.
Have both 17p- and tp53 mutation. Ibrutinib since Oct 15 and continuing to see gradual improvement in WBC, Hg, and platelets. Hardly any side effects. From what I read Idelalisib is not quiet as gentle. Slow but steady wins the race.
--Dennis, Auburn, AL
Fortunately for myself I have no side effects apart from the odd small rash. Glad to hear all is working well for you too!
I am in my 3rd year since diagnosis and still watch and wait. My fish test indicated that i am 17p deleated.My bloods are taken
every 3 months and my wbc was 21 in the beginning and is now 31.my alc was 18 and is now 28.
I suffer from the usual fatigue and an occasional swollen node, but the nodes seem to subside quickly. I rarely get night sweats, but do get a drenching sweat in the day several times weekly. I think i am still at stage 0, bit may have moved to stage 1. No treatment thus far. I make it a point to get at least 8 hours of sleep at night and rest during the day .
From what i have learned on this site, i am happy to put off tx as long as possible. In my recent reading i have discovered that cll folks with our deletion are called 'high risk'. So far i have grown used to having CLL and only wish more folks had an understanding of this type of leukemia...keep on keeping on and best wishes Spud.
I live in the US, not far from Mayo and the U of Minnesota, and would gladly participate in a trial if I could meet the requirements. Nano
Have you not been directed to by your consultant to what medication would benefit you?
My hematologist/oncologist states that i will not require tx at all until i reach stage 4...Nancy
That sounds fantastic
since my diagnosis of CLL in Sept of '07. Does anybody else have this as their status and if so, are you...
than unmutated. I told her I'm CD38 positive and zap-70 positive. She said not to worry. Diagnosed 11...
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